HELP - recently diagnosed with MC - is there hope???

[tcorbett]

Hello All,

I have a medical journal that finally brought my drs to my microscopic colitis diagnosis - after my original symptoms started at least 35yrs ago - I am now 49. At 14 I had major fatigue, achy/painful knees that my dr at the time said, its not arthritis, there is no swelling or redness - end of conversation! In my early 20's I went for tests for D - they said it was stress and to get rid of the stress (I was going thru a divorce from 1st husband) and not have caffeine/chocolate - well, thanks. Then I had red swollen toe joints, a bit distorted - dr said, not sure, maybe raynoids (sp?) - found in his notes to check for lupus - never happened, nothing happened. When joints ached later - put on Naprosin and some type of antacid to help with stomach issues with naprosin. In 1988 after several months of sever fatigue and swollen/painful knees, diagnosis Lupus. In 2002 - started having bad D - didn't think much of it, finally my sister was diagnosed with Celiac spring of 2003, I was diagnosed via blood test one month later - went totally GF! Still no relief, the D was better, never gone. March 2009 - DO ran food allergy tests, found 25 food allergies/leaky gut - took all out including dairy - lost much weight, but no relief. Tried Low oxalate diet and SCD - neither brought relief. Went back to GI this week, the PA listened really well, explained what MC was - (diagnosis from Lahey Clinic August 2010- no help). She put me on Apriso and a mild antidepressant/sleep aid - I have been sleep deprived, slight depression - much stress with finances, family losses. So far no real improvement on Apriso (been 4 days) - I have hope it can work, but since there have been so many years of damage..... My DO has me GF, DF, nightshade free. I am trying eggs again to see if I can eat them. I am also Soy free.

What's next? Do I need to remove all major food allergies or those on my list? What can I eat, there aren't many options - I get bored really easily, especially when I am not seeing improvement. I have watery D 3-4 times a day, sometimes during the night.

Any suggestions, any help, any hope - would be much appreciated! One thing is for sure, I am grateful that we finally have the major trigger and I know what to focus on!!! It's been a long, long, frustrating road, I get tears many times just thinking of it - I also have much fatigue.

Thanks so much - I love this site! I have folks that truly understand what is happening.

Theresa in ME

[MBombardier]

Hi Theresa! I welcomed you in another thread. Well... since you've been GF for so long, disregard what I said over there about being GF relieving achiness.

I haven't been at this very long, and thankfully, diet alone seems to be helping considerably. I suspect that others will recommend that you switch from Apriso to Endocort EC. That seems to be the drug that is the most profitable to the most people with this disease. Someone who knows more than me will be along soon...

I am soooo sorry that your journey has been so long, but hopefully you will find real answers and encouragement here.

[tex]

Hi Theresa,

Welcome to the board. Yes, there is hope. This disease is not easy to understand, but the symptoms can be controlled, with patience and dedication. It sounds as though you've got a good start on your treatment. You may just need to fine tune your diet a bit, or you may just need more time - it can take quite a while for the gut to heal, in some cases. It's possible for casein and soy to cause villus atrophy, just like gluten, and that kind of damage won't heal overnight. And yes, fatigue is a major part of this disease, until we get our symptoms under control. It usually takes a few weeks or so for the 5-ASA, (mesalamine-based), medications to show results, so it's not surprising that Apriso hasn't done much in only 4 days.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[starfire]

Wow, you have REALLY had a tough go of it. I'm sure you are glad to have a place to start at last.

Has your doctor or you considered Entocort for a few months plus the GF diet (among other things - the other things you will have to figure out for yourself I'm afraid). Dairy and soy seem to be the most common after gluten. If you are up to it the paleo diet might be the most help. You might need to work up to that though. Some here are on a modified paleo diet by including foods that they know they don't react to. The Entocort calms things down for most people so the gut has a chance to heal while you are working on diet modification.

Oops, I just found I had missed two responses to your post. Haven't read them yet but I modified my post a little since others had replied already.

Welcome to our family,

Shirley